Dementia and “Acting Out” (And Please Don’t Ever Use the Term “Acting Out” When Talking About People Living with Dementia)

Sarah–not her real name–lives in a nursing home and has Alzheimer’s. As she nears the end stage of the disease, she’s lost the ability to communicate verbally.

Sarah has been a favorite of nursing home staff for her kind smile. Once in a while she is teary-eyed for reasons she can’t express, but she generally exudes a sense of peacefulness. Employees at the nursing home see her as one of the “easiest” (their words–not mine) residents.

When Sarah starts being disagreeable, they say she’s “giving them a hard time.” I have issues with their terminology. She’s not giving them a hard time. It’s not about them. It’s about Sarah, and she’s obviously having a hard time.

She has always welcomed assistance with eating, but now she bats away the spoon as they try to lift it to her mouth. She refuses to cooperate when they change her clothes. She’s made a few weak attempts to slap or hit nurses and aids. Sometimes, when she is touched, she cries out angrily. Staff uses phrases like “acting out,” “behavioral changes,” and “uncooperative.”

These changes occur gradually over the course of a month or so, and staff members talk about how her Alzheimer’s is progressing and how she’s moving into the next stage of the disease. Her family lives a few hours away. When they come to visit, they notice the changes. They’re sad to see her progressing. Her daughter is almost apologetic to the staff when she realizes how difficult it must be to care for Sarah.

“It’s okay,” a nurse tells Sarah’s daughter. “People at this stage of Alzheimer’s act out a lot. We’re used to it.”

Things get worse. Sarah starts yelling at night, but when staff comes in to check on her, she won’t let them touch her. They assume she’s having hallucinations. Nursing home staff and Sarah’s family work on finding some medications to “keep her a bit calmer,” but none of the medications are effective. Although her daughter keeps coming to visit, the grandchildren stay home. No one wants them to see their grandma like this.

The nursing home staff feels their efforts at comforting Sarah at night are futile, so they stop checking on her every time they hear her crying out. One night she falls out of bed. An aid finds her unconscious and calls an ambulance. Details are sketchy on the last time someone might have checked on Sarah and how long she might have been on the floor.

Sarah finds herself at the hospital. Her daughter drives to be with her as the doctor runs some routine tests. The routine tests raise red flags. There are more tests. Sarah is admitted.

Over the next few days, the doctor discovers that Sarah has both bone cancer and a moderately-sized kidney stone. At this point, he believes that the kidney stone is causing more pain than the cancer, but he has no way of knowing.

But he’s certain that she’s in terrible pain.

When Sarah’s daughter tells the rest of the family, they are irate at the nursing home and want to call a lawyer. They don’t want Sarah to go back to the same facility, but the hospital social worker doesn’t see any other immediate options.

Sarah’s daughter is a bit more forgiving of the nursing home. After all, she visited about twice a week and didn’t consider that her mother might have a medical condition causing her pain. She didn’t insist she visit a doctor. She didn’t argue with the staff when they said she was “giving them a hard time.” And she wasn’t surprised her mother fell out of bed. In fact, she was surprised it hadn’t happened sooner.

In the end, no lawyers are consulted and Sarah returns to the same nursing home. Her family enlists the assistance of hospice, and she passes away at that nursing home about three months later.

I don’t know enough details to tell you if the nursing home was negligent. And I’m no lawyer anyway.

What I do know is that Sarah’s situation is far from rare. When people with dementia lose the ability to communicate verbally, they don’t lose the ability to communicate. Communication changes.

Expressions of pain may come in the form of changes in behavior. Unfortunately, we often discount these changes as part of dementia rather than responses to discomfort and distress.

When someone can’t tell us they are in pain using words, they tell us in other ways.

Sometimes we don’t listen.